Now THIS is the life

We have just been enjoying every single minute with Kaelyn home. She is such a sweetie, only feisty when she needs to be, like when mom changes the stickers on her face that hold the oxygen in her nose. She is just so chill. She would be sleeping through the night, but she is on fluid restriction because of her heart so we have to wake her up and feed her every 3 hours. She loves to snuggle, snooze and just take in this whole new life at home. One of her favorite places is Daddy's chest and he loves it too. We went to her first pediatrician check up Saturday so they have a baseline to go on. We go back tomorrow to meet with our actual pediatrician. He was Wayne's doc as a kid and does a lot of work with children with special needs. He actually isn't accepting any patients right now, but after hearing Kaelyns situation he was more than happy to take her. He will definitely be a great resource/advocate to have for our little girl.

We also took her our for a quick jaunt around the neighborhood. She was loving it at first, but then got sick of the stroller, so we hurried right home. This little girl definitely has us both wrapped around her little finger.

Ahh...this is nice

This is what I woke up to Friday Morning

After bath time

Living it up in my super cute bouncer

Game day gear...GO UTES!

They better not play like they did last week!

My game day blanket with all my stats.

Out and about

Faster Daddy, Faster!

All dressed up and ready for the doctor

We're Home!!!!

Kind of a surprise, but we are home!!!  We had set a tentative discharge date for Saturday earlier this week but were trying to keep it cool so that we didn't jinx ourselves.  Then on the way in to work this morning we called to check in on Kaelyn and they told us that we were going home this afternoon.  SWEET!!!!  The craziest thing is, if you would have told us two weeks ago that we would be going home today, there is no way that we would have believed you.  But, after 104 days in the NICU, we are home and it is one of the happiest days of our lives.  For those of you that have gone through a NICU experience you know exactly what I am talking about, for you others, it's just an incredible feeling of joy and awesomeness.

Waiting for Daddy to bring the car around with our FAVORITE nurse Jane

Walking to the car with all our loot, you accumulate lots of stuff over 3 months!

Chilling on the ride home.

"We're home, get me out of this thing!"

First family photo at home.

Daddy and me just hanging out.

Mom's been waiting to put this flower on my head for months!

Our BEAUTIFUL little Kaelyn!

100 Days and Counting

Yesterday was Kaelyn's 100th day in the hospital.  It's pretty crazy to think that it has really been that long. Kaelyn is still doing really well and progressing everyday.  We are hopeful to get her home very soon, but we don't want to say too much cause we don't want to jinx ourselves.  She is taking almost all of her food through a bottle, is on a whiff of oxygen, and slowly but steadily gaining weight.  We would just like her to be gaining weight quicker.

Stay tuned for the good stuff.......we hope.

She wasn't quite sure how she felt about the stretch pants until...

she saw how stinkin cute she was in them

Kaelyn praying that she will be home soon

9-15-09

Kaelyn has had an AWESOME week. All the IVs are out, her oxygen needs are still down, she's in a crib, she got her first REAL bath, she's back on full feeds and has started drinking part of them from a bottle! Today she drank 3 FULL BOTTLES! That is huge for a little girl that hasn't had anything to do with drinking a bottle in the first 3 months of her life. She is such a champ. They compare drinking an ounce of milk for these little ones to us trying to down a gallon of milk.

And last but not least...we have finally heard the "H" word, Home! Its the first time in our venture here in the NICU that it's been thrown out there! At this point the only thing that is keeping her at the hospital is eating. Due to her heart and also down syndrome, eating from a bottle is A LOT of work. (We'll show you some proof) We talked to the doctor yesterday about doing a G-Tube ( tube that they put through her tummy) so we can take her home sooner. That way we could continue working with her on bottle feeding, but still be able to supplement her with what she doesn't finish, because our biggest goal is to get her to about 12 pounds so she can have her heart surgery. Wayne and I really liked that idea, any thing to get our little girl home sooner than later. She would most likely need to come home on oxygen too, so they have changed her over to the type of oxygen that she would come home on and she's doing well with that.

We still don't know when the day will come that we can bring her home, but at least the ball is rolling in that direction. Now for your viewing pleasure, pictures and video clips of Kaelyn doing all her new tricks!

Make sure to get behind my ears

Ahh, now this is nice, I've been waiting for this moment my whole life

Come on in, the waters great!

Look at my tidy bed, you should have seen it a week ago.

Boy this eating stuff is a lot harder than it looks

Sleeping in my Big Girl Bed

Watch closely, I tried to slip right out of mom's hands

This is the second time mom tried to feed me, after about a minute of sucking I was out cold

9-10-09

This last weekend was pretty scary for us. Saturday night when we left the hospital Kaelyn was looking pretty good and they were hoping to extubate (take her off the ventilator) Sunday and put her on a high flow nasal cannula. Then Sunday morning we got a call from the Nurse Practitioner and the Doctor (Its never good when the doctor calls you). They were concerned because her blood gases were worse than before and she was really swollen, which meant she must have a worse infection. Also the PIC line in her arm had a pretty bad reaction and so they had to pull it out. They were also quite concerned because she was not coming out of sedation AT ALL. They had decreased the amount of sedative she was getting and it wasn't making a difference. So yea Sunday was pretty scary. Just when we thought things were looking up they seemed to be taking a turn for the worse. So they got her going on some more antibiotics, ran more tests to see if she did have an infection and we just waited.

Thank goodness our little girl came through, Monday was a completely different day. She looked amazing! Her swelling had gone way down and she was OFF the ventilator. Her oxygen requirements have continued to stay much lower since the balloon was done, which we are so grateful for. The best part was we finally got to hold her, it had been over a week. They also started her back on feeds, while all this was going on she was just getting nutrition through an IV. She started at 6 ml/3 hrs, when she left the U she was up to 42 ml/3 hrs. They start pretty low and then work up to where she was to make sure she can tolerate it. Nothing has shown up on the tests so they don't know why she was so sick. We're learning that there are A LOT of unknowns in the medical world, even with how far we've come in the last decade. Today is her last day on antibiotics, thank goodness - poor little thing has gone through 14 IV's, a Pic line and an arterial line in 9 days! She is such a trooper though, way tougher than her Mom and Dad. We got flu shots the other day and we could barely handle that.

The other day I read an article given by one of the leaders in our church. He said something that hit both Wayne and I strongly. There were times this past week that I just plead with God to fix things, because it seemed as though we were going to lose our daughter if He didn't do something right then and there. I just kept praying, "God I know you're here, I just need to see you" over and over again. This quote has helped me as I look back on what we went through and has brought us both comfort.

"Whenever these moments of our extremity come, we must not succumb to the fear that God has abandoned us or that He does not hear our prayers. He DOES hear us. He DOES see us. He DOES love us. When we are in dire circumstances and want to cry, "Where art Thou?" it is imperative that we remember He is right there with us -- where He has always been! We must continue to believe, continue to have faith, continue to pray and plead with heaven, even if we feel for a time our prayers are not heard and that God has somehow gone away. He IS there. Our prayers ARE heard. And when we weep He and the angels of heaven weep with us. - Jeffrry R. Holland"

As I wept for my little girl, it was such a blessing to know God and the angels of Heaven wept we me...I didn't feel so alone.

Through all this Kaelyn has still managed to put one weight, she's now 5 lb 10 oz! (And thats after the 300 gms she lost due to all the swelling)

Now for pictures of our little sweety and her simple nasal cannula and feeding tube!

Looking up

The balloon is working. Her oxygen needs went as low as 27% yesterday! We haven't seen numbers like that in well over a month. She is almost completely off the Nitric and they are weaning her off the Ventilator. The cardiologists are hoping this will do the trick and buy her enough time to get to the size she needs to be to get the full repair on her heart. Thanks for all your prayers, once again they worked :)

In the darkest moments of our lives, it can be almost impossible to see the light. Just believe it's there, and in time it will illuminate your whole soul. - Jeana

Oh yea...Wayne totally designed/created the background on Kaelyn's blog. He's pretty amazing, all the way around.

The Results Are In

It looks like things might be on the up for Kaelyn now. The doctor that worked on Kaelyn said he was able to balloon open the pulmonary artery enough that he thinks it will make a difference and hopefully buy her some time. Depending on how things go, she may still need the surgery we were planning on for today. We really have no idea when or if that will happen for sure though. The doc. also said that Kaelyn did really well during the procedure and that she will need about a day to fully recover. We are so happy that things went well as we needed some good news to start coming in. Hopefully the snowball effect will kick in and more and more good news will keep coming. Thank you so much to everybody for pitching in on the praying. There is no doubt in our minds that it helped Kaelyn, and us, get over this step.

No Surgey But Yes on the Cath Lab

It is now 4:45 and Kaelyn was just admitted to the
Cath lab. They are going to try and balloon open her pulmonary artery. If that doesn't work they will then try to put a stint in her PDA. More updates to come in a few hours.

No Surgery Today (9-3-09)

First, and foremost, thank you everybody for your prayers and concern.  It appears that there won't be a surgery today.  They found out this morning that Kaelyn has an infection.  She has been on antibiotics since yesterday morning so we are glad that they got on it so quickly.  We really don't know when they will reschedule the operation.  She may go to the Cath lab today, though.  If she does, they said that they will try to open up her pulmonary artery a little bit. So that's where we are for now.  Thanks again everybody.

9-2-09

We got transferred to PCMC fairly smoothly yesterday. Kaelyn apparently wasn't too happy about the move. About an hour before they transferred her, her oxygen saturation dropped really low. Her little heart has been working so hard the past few weeks that it just needed a break. Kudos to her for fighting so hard for so long. After what seemed like forever the transport team showed up and then they put Kaelyn on a ventilator and got her on her way. She needed to be on it for the lab anyways, but still, we wish it didn't have to happen the way that it did. It was pretty scary but in the end things are ok.

Well.....no Cath lab today. The cardiology team did another echo on her this morning and decided that they could see what they needed and that the Cath lab wasn't necessay. So, what did they see you might be asking. Well, they saw that her PDA is totally closed and that is most likely what has been causing her increased oxygen needs. What does that mean? It means that she will be having surgery tomorrow afternoon. Some of her blood labs aren't exactly where they want them and they are worried that she might have an infection. If she does, surgery will be on hold until she gets rid of it. If she doesn't, tomorrow is the day. We should know late tonight or early tomorrow morning.

The surgery won't be quite what we expected though. It will be a shunt connecting a vessel from the aorta to the pulmonary artery. This should increase the amount of oxygenated blood that gets sent out to the body. The part that isn't what we expected is that they will open up her chest instead of going through her armpit. That was really scary to hear but we heard it from the actual surgeon and the more we talked with him the better we felt about the procedure. Thank goodness there are doctors that can fix these types of problems. We'll keep you updated.

We'll leave you with some pics tonight as a pre-game celebration. Tomorrow the University of Utah has their first game of the season. We were going to dress her up in her U attire tomorrow but probably won't have time to, so we did the best we can. Enjoy!

Did you see her red bow?

9-1-09

Well, back to Primary Children's Hospital we go. Kaelyn will be transferred back to PCMC today so that she can have surgery tomorrow. The cardiology department finally decided that it was time to get her in the Cath Lab in order to get a better look at her heart. They will run a catheter up into her heart from the groin and get some measurements and stuff. Then, if they think that she needs a shunt, to increase bloodflow to her lungs, they will do that at the same time. We have been told that it is a very routine procedure but it's still a bit scary.

We really enjoyed being back at the U hospital and are going to miss it. Kaelyn made some good progress while there. She got up to about 5 1/2 pounds, started wearing clothes, and got out of the isolet and into an open warmer. The only bummer is that her oxygen needs never got to where the doctor's wanted them, no matter what they tried. And believe me, they tried a lot of different stuff. So, in a way, it's a relief that finally we will get a good answer about what is going on with her oxygen needs.

Jeana and I were talking last night about how hard it is to know that our little girl has to lay in a bed all day and only gets out when we are there holding her. On Saturday, I was there alone for 4 or 5 hrs and got to hold Kaelyn the entire time. The nurse just kept saying how cool it was that Kaelyn was doing so much better while I held her. Honestly, of all the things I've done in my life, that time with her has to be one of the best. Even though I was sitting in a hard plastic chair the entire time, I had so much fun looking at her and holding her. I guess what I'm trying to say for those of you that have kids is, don't take for granted the fact that you can hold them any time you want. Show them your love and squeeze them as often as you can, without embarrassing them of course.

Please pray for Kaelyn. We know it helps.